One Family's Journey with LBD

I haven’t updated about Dad in quite a while so I thought I would take a little time now while my little one sleeps. She keeps me pretty busy these days and as a result, the blogging tends to get put on the back burner. I want to try and be better about posting about our journey, Dad and our memories. We’ve had a pretty good summer and I can hardly believe October is upon us, already. I have a lot of catch up posting to do so hopefully I’ll get to it soon.

Overall, Dad has been doing well lately. While he still battles daily with some hallucinations, they aren’t nearly as bad as a few months ago. In general, he’s still worried about his “friends” stealing things around the house so everything is hidden, the cabinets, pantry door and refrigerator are barricaded after each use with kitchen utensils. Some times, Dad will jump up from his chair and run to the front door to make sure someone is not breaking in. It’s a bit frustrating when you put down your glasses for a minute and they’ve disappeared and Dad doesn’t remember where he’s hid them for safe keeping. Needless to say, things go missing for weeks until it’s finally uncovered. We’re getting used to it but it’s still frustrating we can’t put anything down for two seconds without it disappearing.

Aside from those issues, things have been much better around here. Dad is aware he’s been doing well, too. He’s eager to go out each day and go to the movies, have lunch or run errands. He’s helping around the house with setting the dinner table and wiping it clean after each use. He picks up the dog poop each day and gets the mail every morning. The only household chore he struggles with but insists on doing is taking out the trash. No matter how many times we tell him, show him, change the position of the cans, Dad always puts the trash into the recycle bin and the recycles in the trash. Despite printing the words “RECYCLE” and “TRASH” on each can, he still mixes it up. So every time he takes the trash out, we have to follow behind and switch it around.

I think Dad is also enjoying have his granddaughter around. He does so well with her and every now and then, he’ll just get up on his own and start playing with Baby on the floor. It’s so wonderful to watch the two of them and I try to grab my camera and snap a shot or two so I’ll always have that memory for Baby.

Well, Baby is starting to stir so I’ll stop here for now. Hope all is well with all my readers.

If you are going to do just one thing this year to raise LBD awareness, tell Congress about LBD and about your support for a very important act going to the House floor for a vote as early as next week!

On Friday, the Parkinson’s Action Network announced the following news:
On September 23, the full House Energy & Commerce Committee unanimously passed by voice vote H.R. 1362, the National Neurological Diseases Surveillance System Act. The legislation will establish a national data surveillance system that will track and collect data on the epidemiology, incidence, prevalence, and other factors of neurological diseases, including Parkinson’s and multiple sclerosis.

The surveillance system will be developed and maintained by the Centers for Disease Control and Prevention (CDC). This system will provide researchers and epidemiologists with a coordinated system of health data on neurological diseases and should fuel further research into neurological disorders like LBD. (Visit the Parkinson’s Action Network to learn more about the bill.)

Your Representative needs to hear from you today! Make sure your Member knows that the Lewy body dementia community strongly supports this important legislation. LBDA has developed a custom message about LBD and this act for your use, and the Parkinson’s Action Network’s website does the rest!
Please voice your support by e-mailing your Representative in support of H.R. 1362.

Mark your calendars for the second annual Allan D. Morrison 5K Run/Walk. The event, benefiting the Lewy Body Dementia Association (LBDA), will take place in Melrose, Massachusetts on Saturday, October 16, 2010 at 10:00am.

Help raise awareness and much needed research dollars for Lewy Body Dementia. For more information, to register for the race or to make a donation, check out the website by clicking here.

Awareness is our beacon. It’s how Lewy body dementia will come out of the shadows and into the public eye.

The Lewy Body Dementia Association is committed to increasing awareness about LBD 365 days a year. This year, October 10-16 will truly be A Week To Remember as LBD families are Standing Strong with LBDA to raise LBD awareness and support throughout the country.

Participate by selecting at least ONE activity from any of the three links below. Together, we are…

Increasing Knowledge: Help to advance the cause by getting involved in community-based awareness efforts. Let’s make Lewy body dementia a household word!

Sharing Experience: No one should have to face LBD alone. Participate in one of the many ways LBD families connect to share their personal experiences of living with LBD.

Building Hope: Your much-needed support of LBDA’s mission means new hope for the 1.3 million families who are living with this devastating disease.

Join us or learn more about how you can Stand Strong with the 1.3 million families affected by Lewy body dementia.

ATLANTA, GEORGIA, USA, July 12, 2010 – Nearly 80% of people with Lewy body dementias (LBD) received a diagnosis for a different cognitive, movement or psychiatric disorder before ultimately learning they had LBD, according to the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias, released today.

This new report reveals people with LBD and their caregivers face barriers to obtaining an early LBD diagnosis. Caregivers rate specialists and general practitioners as inadequate in discussing disease progression. Additionally, caregivers experience moderate to severe emotional burden, and most experience a sense of isolation because so few people know about LBD.

LBD is the second-most common form of degenerative dementia in the elderly, affecting an estimated 1.3 million people in the United States. Symptoms include dementia, unpredictable variations in cognition, attention or alertness; hallucinations, Parkinson’s-like symptoms, a sleep disorder characterized by physically acting out vivid nightmares and dreams, and a potentially life-threatening sensitivity to certain medications.

“LBD is a family disease, affecting not just the person with LBD but also the caregiver,” said Angela Herron, President of LBDA’s Board of Directors. “This report underscores the challenges presented by a disease that affects cognition, movement, behavior, sleep and mood. Despite the fact that LBD is a common form of dementia many doctors and other medical professionals are unfamiliar with LBD, compounding the burden even further.”

Importance of Early Diagnosis and Physician Awareness of LBD

Half of people seeking a diagnosis saw 3 or more doctors for 10 visits over the course of a year before they were diagnosed with LBD, and diagnosis required more than two years from the onset of symptoms for 31% of cases.

Although prognosis varies among individuals, LBD is often a more rapidly progressive disease than Alzheimer’s disease, and early diagnosis provides families an opportunity to plan for expected decline in cognition, function and behavior. Given the evidence that suggests treatment with cholinesterase inhibitors may benefit patients with LBD more than those with Alzheimer’s disease, barriers to diagnosis have a negative impact on both the patients’ and caregivers’ quality of life. Especially important, early diagnosis of LBD provides physicians with an opportunity to minimize exposure to medications that may aggravate symptoms, such as antipsychotic medications. Nearly 60% of people with LBD may experience severe, potentially irreversible reactions to antipsychotic medications, and in rare cases, a life threatening condition called neuroleptic malignant syndrome may also occur.

LBD Progression Not Adequately Addressed

While neurologists made most LBD diagnoses, caregivers most often relied on primary care physicians for ongoing follow-up care and reported difficulties coordinating treatment of LBD symptoms between primary care physicians and specialists, as medication for one LBD symptom may worsen another being treated by a different physician. Caregivers rated over 40% of both generalists and specialists as inadequate in telling families what to expect in the future, and more than half of physicians as inadequate in suggesting telling the family where to find more information on LBD or community-based resources.

“The lack of information on disease progression is a serious challenge to LBD families,” stated Herron. “It’s essential that families plan in advance for the relentless progression of LBD, and not having answers on what that decline will look like or how fast it may occur, adds significant stress to an already difficult situation.”

Caregiver Burden is Physical and Emotional

Caregivers reported moderate to severe levels of disability in the person with LBD and over 90% had taken over instrumental activities of daily living, like preparing meals, managing medications, transportation, finances and appointments. Over 60% of caregivers indicated the person with LBD could not perform basic activities of daily living, such as dressing or bathing.

People with LBD had high rates of behavioral problems and mood changes and two-thirds of caregivers reported a crisis in the past year that required a hospital emergency room, emergency medical services, psychiatric care, or law enforcement.
LBD caregivers face a number of challenges: social, medical, functional and financial. LBD caregivers feel isolated and often have to respond to crises, but may not be receiving adequate support from family, friends or healthcare providers. These features have the potential to lead to adverse outcomes for the caregiver “burnout” including stress, depression and poor health.

“Poorer caregiver outcomes directly lead to increases in patient institutionalization and declines in quality of life, stated Dr. James E. Galvin, a member of LBDA’s Scientific Advisory Council and Professor of Neurology and Psychiatry at New York University. “This may be particularly important in LBD where patients are at an increased risk of institutionalization and mortality.”

The findings are based on data collected by the Lewy Body Dementia Association (LBDA) in an online survey of 962 LBD caregivers. Designed by Steven H. Zarit, PhD, an expert on caregiver burden in dementia and Professor of Human Development at Penn State University, the survey was conducted over a 6-month period. Dr. Galvin analyzed the survey data, which was published in the July, 2010 issue of Parkinsonism & Related Disorders and the April-June, 2010 issue of Alzheimer Disease & Associated Disorders.

The full text of the Lewy Body Dementia Association’s Caregiver Burden in Lewy Body Dementias can be viewed by visiting http://www.lbda.org.

The Lewy Body Dementia Association

The Lewy Body Dementia Association (LBDA) is the leading voluntary health organization in raising awareness of Lewy body dementias (LBD), supporting patients, their families and caregivers, and promoting scientific advances. LBDA’s Scientific Advisory Council is comprised of leading experts from the United States, Canada, the United Kingdom, and Japan in research and clinical management of Lewy body dementias. To learn more about LBDA, visit

LBDA is urgently seeking persons in Texas or California who have Capgras syndrome, along with their caregiver, for possible interview with an international psychology magazine. Capgras syndrome, which can occur in LBD, is a disorder in which a person holds a delusion that a friend, spouse, parent or other close family member has been replaced by an identical-looking impostor. Those interested are encouraged to send a brief summary about your personal experience with Capgras syndrome in LBD to Angela Taylor at ataylor@lbda.org.